Archive for October, 2013

I live in fear

(Permission to share)


Some ME(cfs) community members feel their voice is constantly threatened from within the community. This post ( helped remind people that those of us in the ME(cfs) community are not “the enemy”. That reminder prompted one patient to ask that the following be posted:

I live in fear – all day every day.

It shouldn’t be this way but it is.

I live in fear of the long-term effects of ME/CFS and of being so severely sick starting at such a young age.

But this is not my only fear.

I live in fear of not being appropriately treated for my illness (or for additional illnesses) by medical professionals who disbelieve me and belittle me if I reveal that I have ME/CFS.

But this is not my only fear.

I live in fear of people finding out that I have ME/CFS and belittling the significance/severity/impact of ME/CFS.

But this is not my only fear.

With so much fear in my daily life, I would like to feel I get support within the ME/CFS community.

Yet even within the ME/CFS community

I live in fear.

I live in fear of adding my voice within the community.

I live in fear that if my views aren’t as outspoken as the views of others I will get shouted down – this is often done publicly, loudly, and vehemently.

I live in fear that I will be denounced by those who say (or imply) that any view that differs from theirs is worthless, is shameful and makes me an enemy.

I live in fear of getting involved – even though the community needs all the help it can get – because my voice will not be valued or respected, or even heard above the clamor of those who proclaim theirs is the one true voice.

I am not alone….

How many others are there like me in our community, who live in fear?

How many others are there who, like me, fear giving voice to their views?

How many others are there who, like me, fear getting involved in advocacy because they will be labeled, demeaned, belittled and demonized because of their views?”

We all want better lives for people with ME(cfs). We all deserve to be seen, to be heard and to be valued.


If only certain points of view are considered valid – we shut out many voices.

If we shut out many voices and viewpoints, we are also shutting out many potential advocates.

If we shut out many potential advocates, we limit the work we can do.

In supporting each other, in listening to and respecting differing views, more people will work with us because they feel respected, supported and valued.

With more people working with us, we can get more done.

With more people working with us, sharing the work that needs to be done, we might even have a little bit of energy left over at the end of the day. Wouldn’t that be nice?





More experts have signed the letter!

Remember back on the 23rd of September when the letter signed by 35 ME(cfs) experts was released?



Additional experts have signed the letter bringing the total (as of 26 October 2013) to 50!

Check it out!

Crimes, criminals, and the need for justice

The “crime” we are faced with is that

HHS has ignored us,

HHS has ignored CFSAC,

HHS has refused to develop a strategic plan for ME(cfs),

HHS has refused to openly and honestly engage with us and

HHS has secretly developed and made arrangements for the IOM study.

The common thread here is HHS.

And yet, it feels as though ME(cfs) advocates and patients are accusing each other of being the “criminals” rather than focusing on HHS.

If we let HHS divide us into tiny factions pitted against each other, HHS will definitely “get away with” their crimes against us.

It is important to remember who the “criminal” is here.

We should choose instead to focus our grievances, energy and actions on addressing HHS’ “crimes” and doing everything we can to achieve justice for everyone affected by ME(cfs).

Had HHS had an engaged, and open relationship with us before now, the news on Sept 23rd 2013 from the CFSAC ListServ about the IOM study (“We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month…..”) might have been a nice surprise present.

Instead, coming on the heels of so many recent instances that have added to the ME community’s distrust of HHS, it is difficult to have trust and confidence that HHS has our interests at heart. ( )

Thank the experts who signed the letter on ME case definition

On Sept 23rd, 35 ME experts sent a letter to the head of HHS (Sebelius) and others (

You can thank them by signing this petition:

(Details here: )